Validity of the Chinese Version of the Person-Environment Apathy Rating (PEAR-C) for Persons With Dementia

Abstract Apathy is a prevalent neurobehavioral symptom in dementia. Despite that environmental stimulation plays a key role in apathy, it is often overlooked in assessment. The Person-Environment Apathy Rating (PEAR) scale is currently the only validated apathy scale for persons with dementia that addresses environmental stimulation and is only available in English. This project translated the PEAR scale into Mandarin Chinese and evaluated its content validity. The PEAR scale includes two subscales: PEAR-Environment and PEAR-Apathy. Each subscale includes six items. The PEAR scale translation and validation were conducted through a four-step process. First, the PEAR scale was translated from English into Chinese by two bilingual PhD-prepared researchers. Second, the two Chinese versions of PEAR (PEAR-C) were back-translated into English by another two bilingual PhD-prepared researchers. Third, three content experts reviewed the two translated scales and reconciled a final PEAR-C scale. Finally, these three experts individually rated the PEAR-C and evaluated its content validity item-by-item in two aspects: 1) content equivalence: appropriateness to use this scale in Chinese cultural setting, and 2) semantic equivalence: the scale remains the same meaning after translation. The content validity index (CVI) was calculated to sum the ratings across experts. The CVI of content equivalence for all items was 1.0 for both subscales. The CVI of semantic equivalence was 0.98 for the PEAR-Environment and 0.97 for the PEAR-Apathy. The PEAR-C shows substantial content validity. Its reliability and construct validity need further evaluation. This scale is promising to assess apathy for individuals with dementia in the Chinese-speaking community.


SAFETY CONSIDERATIONS OF ADAPTIVE HORSEBACK RIDING PROGRAM FOR ADULTS WITH DEMENTIA AND THEIR FAMILIES Alicia Oestreich, and Beth Fields, University of Wisconsin-Madison, Madison, Wisconsin, United States
Human-animal interactions, including equine-assisted services, are becoming increasingly popular to enhance the quality of life of adults with dementia and their families. However, there is a lack of knowledge on safety considerations when serving this population. The purpose of this qualitative descriptive study was to explore the safety perspectives of key stakeholders involved in an adaptive horseback riding program for adults with dementia and their families. Ten, 30-minute semi-structured interviews and two, 60-minute focus groups were conducted with horseback riding program instructors and staff, dementia specialists, and adults with dementia and their families. Thematic analysis of data were guided by the Professional Association of Therapeutic Horsemanship International's Core Safety Standards and completed using NVivo 12. Stakeholders described two central themes to consider when offering equineassisted services at therapeutic horseback riding centers to adults with dementia and their families 1) dementia and horse training parameters, and 2) enrollment procedures. Stakeholders recommended that training should encompass "how to interact and communicate in a positive way with the adult with dementia…redirect if a behavior comes up", and horses should be specially selected to "tolerate standing in a ramp during a difficult mount". Stakeholders also shared that enrollment in the program should include learning the adult's health and prior horse experience, precautions and contraindications, horseback riding readiness, and availability of and support from family. Information gleaned from this study may help researchers, instructors, and staff develop policies that demonstrate optimal safety practices when delivering equine-assisted services to adults with dementia and their families. Apathy is a prevalent neurobehavioral symptom in dementia. Despite that environmental stimulation plays a key role in apathy, it is often overlooked in assessment. The Person-Environment Apathy Rating (PEAR) scale is currently the only validated apathy scale for persons with dementia that addresses environmental stimulation and is only available in English. This project translated the PEAR scale into Mandarin Chinese and evaluated its content validity. The PEAR scale includes two subscales: PEAR-Environment and PEAR-Apathy. Each subscale includes six items. The PEAR scale translation and validation were conducted through a four-step process. First, the PEAR scale was translated from English into Chinese by two bilingual PhD-prepared researchers. Second, the two Chinese versions of PEAR (PEAR-C) were back-translated into English by another two bilingual PhD-prepared researchers. Third, three content experts reviewed the two translated scales and reconciled a final PEAR-C scale. Finally, these three experts individually rated the PEAR-C and evaluated its content validity item-by-item in two aspects: 1) content equivalence: appropriateness to use this scale in Chinese cultural setting, and 2) semantic equivalence: the scale remains the same meaning after translation. The content validity index (CVI) was calculated to sum the ratings across experts. The CVI of content equivalence for all items was 1.0 for both subscales. The CVI of semantic equivalence was 0.98 for the PEAR-Environment and 0.97 for the PEAR-Apathy. The PEAR-C shows substantial content validity. Its reliability and construct validity need further evaluation. This scale is promising to assess apathy for individuals with dementia in the Chinese-speaking community.

CAREGIVING THROUGH TURBULENT TIMES: FINDINGS FROM THE MIT AGELAB'S LONGITUDINAL STUDY OF FAMILY CAREGIVERS Chair: Julie Miller Discussant: Julie Miller
Nearly one in five Americans is an unpaid family caregiver, and the need for family caregivers is projected to grow over the next several decades in the face of longer lifespans (AARP 2020). Yet the increasing centrality of family caregivers for providing care to an aging population highlights two knowledge gaps: first, the degree and experience of burden and stress caregivers manage around balancing care with other family and work responsibilities; and second, a lack of knowledge about the caregiver journey and the microtasks of care, including how caregivers leverage -or not -different tools, technologies and resources to support the care they provide. To develop a deeper understanding of these questions and others, the MIT AgeLab has built a research panel of over 1200 caregivers providing care to another adult family member. This symposium will present findings from the MIT AgeLab Caregiver Panel, including: 1) an examination of the extent to which family caregivers identify as such and how they feel about their roles; 2) how family caregivers experienced the COVID-19 pandemic both personally and around the care they provide; 3) caregivers' use of and attitudes toward technology to support the care they provide; and 4) what caregivers identify as their key unmet needs. The session will include a facilitated discussion around the intersection of COVID-19 with caregivers' technology use, experience of caregiving, and future needs, as well as to identify additional research questions and directions for future research with the MIT AgeLab Caregiver Panel.

CAREGIVERS' LANGUAGE AND EMOTIONS AROUND CARE Lisa D'Ambrosio, Massachusetts Institute of Technology, Cambridge, Massachusetts, United States
Caregiving encompasses a range of roles and activities, but not all people providing care identify as "caregivers." Understanding the vocabulary and emotions that caregivers have should first, contribute to an understanding of caregiving and caregivers per se, and second, aid in communicating with them more effectively. Analysis of survey data from members of the MIT AgeLab Caregiver Panel shows variance in self-identification as caregivers and in language and emotions around caregiving, reflecting diversity in the care experience, but consensus around the core concept of a caregiver. This presentation will report on how caregivers' relationships, gender and care tasks affect their language and identify a caregiver experience-identity gap: a space between what caregivers do and what they report. We highlight how an understanding of caregivers' experiences of what they doas opposed to a catalog of tasks they do -may be more important for understanding their experience of strain.

TECHNOLOGIES AND SERVICES TO SUPPORT CARE: CAREGIVERS' EXPERIENCES AND PERSPECTIVES Chaiwoo Lee, Massachusetts Institute of Technology, Cambridge, Massachusetts, United States
Technologies developed to make life easier for the general population -including smart home products, internetenabled services, communication platforms, and health management systems -also have the potential to assist individuals who provide care to loved ones. While caregivers may be eager users of technology to support their responsibilities, some technologies remain untapped resources. An in-depth survey conducted with the MIT AgeLab Caregiver Panel around attitudes toward and use of technology for themselves and for caregiving showed that while caregivers use a wide range of technologies for themselves, their use for caregiving is limited. However, while caregivers did not universally use technologies or services to support the care they provided, those who did so generally reported positive feelings about their use. This presentation will report on technology experiences -including perceived usefulness, ease of use and integration, impacts, and overall satisfactionamong caregivers of various characteristics and conditions.

CAREGIVING THROUGH THE PANDEMIC: EXPLORING THE IMPACTS OF COVID-19 ON CAREGIVERS AND THEIR CAREGIVING EXPERIENCES Alexa Balmuth, MIT AgeLab, Cambridge, Massachusetts, United States
In the midst of the COVID-19 pandemic, many caregivers have been tasked with a unique role; not only to keep themselves safe and healthy, but also to protect and find new ways to aid their care recipients, many of whom are older adults at relatively high risk for severe complications from COVID-19. These challenging circumstances have driven caregivers to quickly adapt as they continue to manage their personal lives and caregiving responsibilities. Utilizing three waves of survey data from the MIT AgeLab Caregiver Panel, this presentation will examine the attitudes, experiences and worries of family caregivers at several time points along the course of the COVID-19 pandemic, as well as caregivers' preparations and coping behaviors along the way. Differences between caregiving situations will also be discussed.